Hi, having had a problem with my tongue for about 2 years, I was diagnosed with tongue cancer in Jan 08 - I had an operation in February to remove the tumour from the left hand side of my tongue and reconstruction of a flap (taken from my right thigh). The op seemed like nothing compared to the 6 weeks of radiotherapy that followed. Having read a lot of the posts on this site my symptoms during radiotherapy were very similar to those described. Sore's on the inside of the mouth, problems with eating, very tired, and sick. During the last two weeks of the radiotherapy travelling 109 miles each trip was torture. Neil, my husband drove me there while I nursed a bowl on my lap. But that's in the past! The problem I am having now is that my tongue is swollen, and swells more once I have eaten, there is also a burning and tingling sensation most of the time. I find that when I am worried or stressed about anything the problem seems worse. My consultant has said that it is to do with the nerves regrowing and has put me on a mild dose of anti-depressant and said that this would help. It would be great to hear from anyone who has had or has the same sort of symptoms.

hi sue
welcome to the site,although i did not have surgery i had chemo and radiotherapy,the radiotherapy really takes it out of you and i think most of us on here would agree.i like you had a swollen tongue for some time and also the burning sensation and tingling,it used to drive me nuts as there is no getting away from it is there.the only advice i can give you about the burning which helped me is steer away from spices and pepper and eat things that don't aggravate it.what a long way you had to travel you poor girl for your rt.i thought my journey was bad enough and that was only 10 miles each way!someone will see your post sue and be able to give you better advice than i have.i am pleased you found this site.take care love shirl xxx

Hi Sue,

I had tonsil cancer and don't know much about tongue cancer, other than what I read here. Had nothing wrong with my tongue until after rads when it had a very sad life of its own; sticking to the roof of my mouth, lack of taste buds and saliva, small but bothersome mouth sores - you know the routine. I'm fine now and it's nearly a year later. Julia should be along any moment with lots of info. She too had tongue cancer, expresses herself well and is always eager to help a fellow sufferer. Dr. Joshi always has great information and can lead you to links both on this board and elsewhere.

I'm chiming in not only to wish you well and tell you that I'm of no help whatsoever, but to say that I lived in King's Lynn! It's rare that I meet anyone who knows anything about it, let alone where it is. (I do the '45 minutes north of Cambridge' bit and then I get the 'Ah-ha's.) Some former coworkers sent me a Facebook signup for Friends of Norfolk that I'll eventually sign on to. Am eager to return for a few days to catch up, but given the economy the way it is.....

I lived on King St., next to the landing for the ferry that goes back and forth over the River Great Ouse between East and West Lynn, and a few doors down from the Tuesday Market Place. I lived at Old School Court, a former girls' boarding school that was made into apartments. Beautiful grounds, large airy rooms, wonderful experience. In 1996-97 I worked for the Campbell Soup Company on Hardwick Road, a temporary one year position, on loan from CSC in Sacramento. Campbell's was sold to another company a few years ago and my coworkers are spread far apart.

Where did you go for treatment?

I wish you well.

Take care,

Mimi

Hi Sue

I had similar surgery (my flap came from my right forearm)in February 05 but no radiation. Flappy still tingles sometimes--especially when I eat spicy food--and when I touch my lower left lip my flap feels cool. Because so many nerves were interrupted, it's not surprising that you're having strange sensations. The nerves from my native tongue have grown back into Flappy quite well (my doctor confirmed this by poking my flap at various points with the wooden end of swabs). My flap shrank a bit after surgery, and I've had no swelling. The effects of rt can last quite a while, so I'm wondering if it could be related to that.

Does the swelling occur more with some foods than with others? I've only recently started eating on the left side of my mouth (terrible teeth, now removed) and my flap seems to be especially irritated after I've had something really salty and crunchy. If the swelling can't be traced back to something you've eaten, please have it checked out--unexplained swelling is rarely a good thing.

Please let us know how things turn out.

Julia

P. S.: Thanks, Mimi

Hi Sue

I had radiotherapy to my tongue and neck area in Nov 2007 and am still having terrible problems with a very,very sore tongue.Sometimes it depends on what foods I eat,sometimes when I'm stressed and sometimes because I think it just loves to constantly aggravate me all the time just for the hell of it when I think I might be getting better!! ha ha! I have tried to put my sore tongue down to what food I eat but one day I can eat say a sausage,then a week later I can have the same brand sausage again and within minutes of eating it I can be in absolute agony for days.There just isn't a pattern.It drives me bananas. I'm still on alot of pain relief for this and other nerve damage pain from the op in my jaw,neck and inside my mouth and tongue.I would give anything to be drug free again and not in pain but that just seems a distant dream. I would certainly get it checked out though. My consultant and macmillan nurse have a smile when I constantly ask them to check lumps and bumps but I just want a small bit of peace of mind amongst the other worries we have to put up with. Don't be afraid to ask any questions no matter how small they seem,they are the experts so please ask.let us know how you get on.

Love sammy x

I am so glad that I found this site and posted my problem. What a releif to know that there are other people out there who are having problems similar to mine. I had asked my doctor about support, but my doctor has only had patients that have had rt inplants for cancer of the tongue, and I am the only one she knows of, that has had to have the op and rt, so she couldn't put me in touch with anyone, who I could chat to. I am most grateful to you all for taking the time to give me advise.

Mimi: I certainly know where you used to live and you should join facebook, I'm on there. I don't actually live in King's Lynn but a little village just outside called Terrington St. Clement. I had my rt at Cambridge and it was a 109 miles round trip. My first posting made it sound like it was 109 each way.

Julia: It's a relief to hear that you get a cool sensation, because I get the same when I touch the bottom of my jaw. I also get a tingly sensation when I run my hand along my jaw line.

Sammy: Everything you have said is spot on. One day I can eat a certain food and the next time it leaves me in agony. My consultant has only put me on a low dosage of anti-depressants, can I ask what pain killers are you on, and do they help? My last check up was four weeks ago and I have another next week. He always check it thoroughly. You can come out of there feeling good, that everything is OK, but a day or two later you think the shape or size has slightly changed and then start worrying which does not help the soreness and swelling. My dentist was very helpful last week. Although my consultant has said that the swelling is due to the lymph gland being removed, my dentist explained that the swelling of the tongue would be greater after eating because when you place food in the mouth, saliva is produced. Because my saliva glands have been damaged the saliva cannot escape and because the lymph gland has been removed, this being the gland which would normally return the saliva back into the body, it has no where else to go and can therefore only disburse very slowly hence the swelling.

When my consultant said that it could be up to 2 years before everything is better I didn't really believe him but you had your rt 6 months before me so I better start getting used to it. Sometimes I just feel so sorry for myself and ask myself why me?

Sorry that I have run on but it's just nice to get things off your chest to people who understand.

Will keep you all posted on how I get on next week.

Take Care everyone, till next time

Love Sue x

Hi Sue
What you describe seems fairly typical. My mother had tongue cancer, flap taken from her tummy muscles, followed by RT.

It will be 2 yrs ago next month and the bigges problem she experiences (apart from her teeth breaking off) is the accumulation of saliva and some drooling.

She reckons that her tastes changed on a daily basis, and something she could eat one day tasted too peppery the next day, or stuck to the roof of her mouth or she just couldn't handle. She still has changes in what she can eat from week to week, but they are becoming more few and far between.

She's waiting for some new dentures and no doubt that will be another hurdle to overcome.

Good luck.

Hi Sue

How are you doing. When I read your response its certainly answered a question I've often thought about where your saliva's gone or goes now that we can't produce any in our mouths.I also had my lymph nodes out so wondered about that too.Sometimes I feel a bit "swollen" in my neck,tongue after food or drink and wondered why.As for my medication I've been on quite a bit since my radiotherapy as I had a really bad reaction to it.I'm still on morphine patches though have weaned myself off from 75mg to 12 mg this past 4 months,I'm on pregablin for nerve damage pain,codeine and paracetamol,anti depressants..... you name it i'm on it !! ha ha. I also have liquid oromorph to top up if I'm in a lot of pain,usually when I'm very tired,stressed or just certain days I'm worse than others.Thankfully thats not very often now.I am looking forward to the day I'm off morphine then I can officially say I'm no longer a druggy!!ha ha when that will be I don't know but I will be one day.

My eating has gone a bit to pot at the minute. We had a tasting session at the deli section where I work. I tasted a ham and chicken pie and nearly jumped to the ceiling.We checked the ingredients but could not put it down to anything on it,I now have a very red sore tongue again and will be like that for a few days.It does get you down sometimes.I'd give anything for a chicken korma and rice but I think thats a distant memory now.Oh well.

take care, Sammy x x

Hell Sue

You are most welcome here. A few clarifications below.

quote:

Julia: It's a relief to hear that you get a cool sensation, because I get the same when I touch the bottom of my jaw. I also get a tingly sensation when I run my hand along my jaw line. This is called paraesthesia. It is caused by sensations from damaged nerves.

Sammy: Everything you have said is spot on. One day I can eat a certain food and the next time it leaves me in agony. My consultant has only put me on a low dosage of anti-depressants, can I ask what pain killers are you on, and do they help? My last check up was four weeks ago and I have another next week. He always check it thoroughly. You can come out of there feeling good, that everything is OK, but a day or two later you think the shape or size has slightly changed and then start worrying which does not help the soreness and swelling. My dentist was very helpful last week. Although my consultant has said that the swelling is due to the lymph gland being removed, my dentist explained that the swelling of the tongue would be greater after eating because when you place food in the mouth, saliva is produced. Because my saliva glands have been damaged the saliva cannot escape and because the lymph gland has been removed, this being the gland which would normally return the saliva back into the body, it has no where else to go and can therefore only disburse very slowly hence the swelling. Saliva is swallowed. Lymphatic system drains tissue fluids that accumulate between cells. The pressure in the blood vessels in the area forces fluid out, etc.

Best wishes
Vinod

Feeling very apprehensive tonight as I have a check up tomorrow. Things have improved a little this week with my tongue, I think it's the medication I am on, now starting to work, however I am having a few problems with my teeth on the right hand side (the side I always eat on). I think food is getting between the teeth and making the gums tender. Will have to keep on eye on that.

Will post again tomorrow to let you know how I get on.

Sue x

Hi Sue, hope you got on ok at your check up
today.I have been thinking about you.Let us know x

Sammy x

Hi Dr Joshi: Thanks for the clarification; I couldn't remember the word paraesthesia.

Sue, you're in my thoughts today. I hope everything goes well with the doctor appointment.

Hi All,

Well it's good news, all is well. He's still pleased with the work he has done and how I'm healing,my next appointment will be in 4-6 weeks time. He has advised me to up my medication (Amytrypline) to 20mg a night for about 4 months and to then reduce to 10mg with a view to trying to come off them all together. I explained to him that since I have been on them (10mg a night) I am so chilled. If I go onto 20mg a night I don't think I'll give a care in the world.

Sammy, I hope everything goes OK for you, am thinking of you. Keep us informed.

Sue x

Hi Sue,brilliant news that all is ok.I tried Amytrypline for a while but it gave me even worse dry mouth than I had before,one of their side effects,not a good thing for prevoius RT sufferers. I'm now on Pregablin which seems alot better. I've was however on Durogesic 'morphine'patches 75mg but have now weaned myself down to 12mg now. My plan is to be morphine free by summer-my goal had been christmas,then my brothers wedding,then my birthday on the 20th April but I've just said now its Summer!!tee hee .I just keep plodding on. With my tooth extraction due though I've just put it on hold for a bit.Glad you're feeling chilled out for a bit.

Sammy x x

Oh Well here we go again. It's the evening before my next checkup and feeling very apprehensive as usual. I go in feeling very clamey, with hot and cold sweats, and usually come out with a big smile on my face.

Over the past couple of weeks things have not been so bad, the pain is not quite as bad, as it has been, however why is it that you still think they could find something evil. Hopefully they will change my appointments to every other month rather than every 4-6 weeks.

I try and think positive for the future and must do a good job of it because friends always say I'm positive and happy, considering what I have been through, but I feel that I am always thinking about the possiblity of re-occurence and it's horrible, people just don't know what we have to live with.

Sorry if I sound as if I'm moaning, but I'm all by myself at the moment, kids, well they are 21 and 23 are out and hubby is away at a re-habilitation centre as a result of an accident he had 4 years ago, so feeling a little sorry for myself.

Will post again over the weekend with the outcome of my checkup.

Sue